Friday, December 08, 2006

A pondering on autism...

A bitch is always concerned when folks take on autism as a cause. As the younger sister of an autistic adult, I have spent my entire life listening to people define what is clearly defined for me and mine.

They almost always get it fucking wrong, take it negative and make life with an autistic seem like a never ending hell.

Enter Patricia Heaton of the confused but gleeful to step into all manner of social issues Heatons, who is all over the press on behalf of a group called Cure Autism Now.

Ugh!

See, this bitch isn’t exactly sure when autism became the cause du jour. C-Money and I have been busy as hell trying to stay on top of my brother’s needs as his guardians. At some point America woke up to the spectrum of autism and celebrity involvement soon followed.

Fuck it, most of the attention has been for the good and a bitch doesn’t have to reference Rain Man anymore (wink).

But if I have to suffer through another celebrity interview featuring a tearful sorta-star crying over autism I’m going to puke!

I’ve never known a world without autism in it and my life isn’t a non-stop sob fest. It ain’t always easy, but daaaaaammmnn…it ain't all that.

Give me fucking break!

No…for real…give it a break, for the love of all that is celebritized and therefore instantly relevant.

My brother is 36 years old. He is profoundly autistic, has a vocabulary of less than 100 words and is a pretty cool dude. He has friends…his sisters get on his nerves…he enjoys French fries and rides on the MetroLink.

Do I wish they could find the cause of autism?

Yes, but not because the sight of my brother makes me cringe with pain and sorrow.

What I need is a fully funded community based program for profoundly autistic adults with transportation included....and some motherfucking dental coverage for him too.

Blink.

Anyhoo...

I came to terms with a different kind of normal years ago and when people ask me for advice because they have an autistic in their life I tell them to do just that. Re-define normal, because life is worthy of living rather than forever lamenting a condition that isn’t a punishment from a vengeful Gawd.

24 comments:

Anonymous
said...

Although my brother's autism is relatively mild i understand your frustration/sadness/hope/dismay/skepticism. It is mind boggling to think 1 in 300 children will be diagnosed with autism yet it is still not completely understood.I thank you for this post.

Patricia Heaton is pretty self-righteous. I've seen her interviewed before. I used to work with autistic children and they could be amusing. There was a child I worked with, who, anytime she dropped something on the floor (like a book or pencil, etc) she would pick it up and say to it "Are you okay?". I'm not trying to make fun of people with language disorders. But I agree that it doesn't have to be all weepy and depressing.

As portrayed on T.V. and in film, autism is about sad parents who subject their children to trauma in an effort to make them "normal" so the kids will say "I love you." They never consider working with symptoms of their particular autistic. I suspect they always make it about children because they think we won't care about adults.

I overheard someone say that since it was decided or discovered it's a spectrum, we're all a little autistic. And that too is aggravating: suggesting we accept a condition or state of being because we all have it and will therefore be helping ourselves.

Hi, I haven't ever posted to this blog before, but I have followed it for a long time and admired the incisive, "rings true" nature of it! :)

I think the first posting I read was "Snakes in an IHP Meeting", and I was hooked! :D Having worked with people with disabilities as a behavioral science specialist for most of my adult life, I have attended my share of IHP meetings! Snakes would definitely be a welcome diversion to most of them!

I had a lovely autistic foster son for five years. He came to me and my ex-husband (who was deaf) at age 9. I had been his respite worker for several years before that. His family had gotten to a point of being unable to deal with him. They were looking for a group home for him when this new foster care program was created.

I am a person who has "the touch" with animals. I am able to tell what they need, and I have had tremendous success with all kinds of creatures that are difficult to keep successfully. I applied "the touch" (a bit of horse whispering!) to my young man (as well as some behavioral science! ;) My ex and I used American Sign Language as the primary language at home, and this was very helpful in communicating and reducing frustration and acting out behaviors. The time we had together was surely no sob-fest! :)

After 5 years of accepting his behaviors as being normal for him, teaching him substitute behaviors and ways of communicating, and also working with his family to help them communicate better with him, my young man went back to them. He integrated into a regular classroom with an aide and facilitated communication. He is a joyful young man, and he doesn't need to be "cured"!

I think we are seeing more and more that acceptance and encouragement and appreciation of the skills and insights of people with autism works so much better than trying to "intervene" and "cure". Providing them with alternative communication opens up a new world for them and us!

I wonder if Temple Grandin (ANIMALS IN TRANSLATION) who built her career on her autism wants to be "cured". If there had been a pill or operation to "cure" her as a child, would she have gone on to give us the insights into animal behavior (and autism) that she has? Her parents loved, accepted, and encouraged her. They trusted her insights, and everyone came out a winner.

If the new act of congress can bring more of this about, it will be a wonderful thing.

My daughter, the Em on my blog http://www.hahnathome.com, is 13, nearly 14, and though she has a vocab much more developed, still functions on most fronts as a 7-year-old. I knew this going in...the day I picked her up in neonatal to join my family, I was WARNED...I also know that I'll have her for far longer than her twin brother or her older brother. Exit exams and IEPs don't do much good here. No one can walk in these shoes until they've slipped them on their feet and had all that soft, squishy padding more than a little broke in. I liken it to being Gay or having AIDS--as it touches you, you care...you get it...in these cases, it's too far removed from both the money and the sound byte to make much of difference. And, it makes me sad. Because--my girl--she's perfect...for me...for her brothers...for her friends.

What about those autistic people who have limited communication skills, hurt themselves regularly and live very restricted lives as adults in mental health facilities? Are you going to "bitch" at the parents of such people who try to help them while they still can?

WOW!You are GREAT! You go girl!I am a mother with 2 autistic sons10 and 12. I cannot tell you how much frustration and aggravation I have had to deal with from the districts to other parents.My life is not what I thought it would be, but I could not live without these 2 boys either.Thank you for speaking up for thosewho cannot themselves!Would love to chat sometime!

That Patricia Heaton really does need to shut the fuck up. Does she think that she's auditioning for another role, now that the Raymond gravytrain has left the station?

Anyway, what a lovely post on autism, which could be applicable to pretty much any disability. Cures are great, but diginity and decent public assistance in the meantime are much more useful than celebrity croc tears.

Hi, I've linked your blog in my on-line journal. Second, as a child I cared for a close family friend's severely mentally retarded son throughout elementary school. He was 3 years older than I and in our poor school system, there was only one "teacher" for the special needs class (she was finally put in jail after several years of abusing the kids). Needless to say, missed many classes to help Jackie (bathroom, calming him, etc.). They moved away when I went to middle school, probably because I was no longer in the same school. It's hard (my experience), taking the responsibility of special needs kids. However, I have a whole other idea of "normal" than people even my age (now, 35). It's shocking to me how people "just don't know" what life is like for others.

My youngest is STILL trying to get her 14 year old in a group home situation. But since she and her HUSBAND both have JOBS and WORK and ARE RESPONSIBLE CITIZENS she has been UNABLE TO GET ANY DAMN HELP AT ALL. The motherfuckers told her to get a divorce and quit her job. Way to go to keep families togehter and give the other two children she has a fighting chance...

The Combat Autism Act is nothing more than that an ACT by a group of selfish ignorant people. The research money will go their cronies and friends reccommneded by whatever lobbyist is lobbying for whatever big pharma company...oh yeah my old ass is angry about that shit.....

Some may be excited about this BUT its' just another round of congressional bullshit. Remember the congressional power broker/party cowpie still smells like shit even when you turn it over.

"What about those autistic people who have limited communication skills, hurt themselves regularly and live very restricted lives as adults in mental health facilities? Are you going to "bitch" at the parents of such people who try to help them while they still can?"

Before my foster son came to stay with me and my ex, he had limited communication skills and hurt or endangered himself regularly. That's why his biological parents were looking for a placement for him. When I say he would have gone to a "group home" I mean a very secure situation with intense supervision.

We were all very fortunate that everyone involved in his care respected his right to be himself. The concept of "behavior as communication" was just beginning to be explored, and we all agreed to work together to keep track of behaviors and interpret their meanings, then give the young man an appropriate way to get whatever it was he was trying to get. This consistent approach from everyone involved with him worked to raise his level of functioning and communication so that he could be reintegrated with his family.

Research on this method shows that people with autism with even extremely severe,dangerous,long-standing behaviors can be helped tremendously by this approach. The key is to assume that the person knows what s/he wants and is trying to communicate something with the negative, dangerous, inappropriate behaviors. By charting the behaviors with a method called "A,B,C": antecedent, behavior, consequence, it is possible to pinpoint the antecedent of the targeted behavior, record the behavior, and determine the consequence (the autistic person's desired outcome.) The next step is to acknowledge the person's need and teach an appropriate way of satisfying that need.

None of this involves "curing" the person. It is all about acceptance, acknowledgement, and assistance, and it is always helpful. It may not be the complete answer, but it can resolve a lot of problems and drastically reduce the need for medications, restraint, restriction, etc.

My concern, with the "act of congress" is that funding will go more toward pharmaceutical and surgical intervention than toward actually working with and helping the autistic population that we have. This is a group that cannot speak for itself without facilitation (modified communication methods). It is very important that they (like everyone) be respected as valid human beings and that their attempts at communication be respected as valid and redirected as is helpful.

So I hope that along with, and somewhat ahead of, the concept of curing, the concept of respect and understanding will receive its share of the promised funding.

ABB: Thanks for this post... reasonable voices like yours are very much needed in this era of sound-bite witch-hunting. Have you visited the Autism Hub? You'll find many bloggers there who share your view that we need to re-define normal. I think you might also enjoy the YouTube PosAutive Group -- it has many inspiring videos by parents and siblings who love and cherish their autistic family members, unlike all that sob-fest whining.

Autism Reality NB: Shame on you for spreading prejudiced stereotypes about autistic people. When are you going to understand that you are not helping anyone by destroying parents' joy in their children?

Suzanne, Comment 100% on target. My duaghter is trying to put her son in a group home so that he CAN LEARN MORE.....the school district has even issued a report that he is' thriving' while still having no verbal skills or being potty trained. Of course the school district receives several thousand dollars per year from the bug pharma companies because of all the meds he is taking and the school does not want to loose that money. He needs 24-7 schooling and thats' what these homes and special foster care give.

Its a shame the children suffer becasue of all of the non sensical rules that are in place that are only designed to facilitate the flow of money and NOT to help the patients.

thanks for the post! my contention has always been (as a parent of a son with severe autism/down syndrome/you name it)that disability is not a disease that needs to be cured. people with disabilities are already whole people, not broken. just not normal. and normal isn't all that cool anyway, look around! my son needs help learning skills to cope with the world and the world needs help learning skills to cope with my son. who would he be without his autism? i don't love some perfect normal abstract son, i love my son.